Hello, Im new here & am feeling rather scared at the moment. I developed a lump in my thyroid, feeling exhausted, pin in the bck of my neck, so was sent for an ultrasound & they have told me that I have a large cyst & numerous other lumps on my thyroid. Some are smaller cysts & some are solid lumps & some have calcification. I am due to see an endo soon. Please can anyone advise me on what I should ask, what I need to know etc. Thank you.

5 Replies

Most of the time in my experience, Endos don't read notes properly so up to you to give a brief history of your symptoms and how long. Write a list to take with you and go through it.

Ask what exactly the cysts and lumps are and what they are going to do about them. If they say watch and wait then tell them you want them taken out. It is your choice.

I've just had a mass taken out between my thyroid and jugular that didn't show up on any scan and I've had alot of scans. I had immense pain with mine for a year before surgery. One Endo even said give her thyroxine and a yearly blood test. When I'd had that for 15 years! They don't know us and our symptoms and how long we've suffered.

Get your voice heard. One thing I've learnt is take control yourself. Keep a file. Ask for a copy of results as you are entitled to have. Ask lots of questions.

I will definitely be asking lots of questions & writing a list is a good idea. My Doctor reckons they may suggest a full thyroid removal so I have been researching self help for days now as the thought of surgery is really frightening me (as is the possibility of any malignancy).

Im wondering if my iodine is low? I've been vegetarian for 30 years. I have no idea where to start!

I hope you are feeling a lot better since you've had that mass removed.

I thought I was having right side of thyroid out and he only took the mass. It didnt show up on all the scans as was very deep near jugular. The thyroid looked okay so he left it. May have to come out at a later date. They won't know about malignancy until they take it or half of it out and test it.

My neck feels empty so I know they've taken something out. Quite alot of pain relief needed. I'm on day 3 post op. Surprised at how exhausted I am.

My daughter is vegetarian too. Research on diet intake is key to top up any deficiencies. As is research on questions to ask. We wait so long for these appointments we have to make the most of them. Blood tests show the things we lack in our diets. So maybe ask Gp to check for you.

The thyroid is still there. It was a fibrous mass from my jaw to my collarbone bone that was causing the trouble. Horrendous pain for a week after but controlled with morphine. But now on no painkillers for the first time in a year. Thyroid behaving itself. I'm on Hrt also now and I feel fabulous. My neck has a small scar that's healing really well with bio oil. The mass was nothing nasty as it's been tested. I saw the surgeon 3 wks after surgery. Next see him in November. My neck feels strange that side but no pain. After a year of being fobbed off and treated like a hypochondriac they finally realised there was something in my neck causing pain. But it did not show up on any of the scans I had. Mri or Ct or Ultrasound.

To anyone on here who have pain please keep on at them cos if somethings wrong you are entitled to have it investigated. I have been to hell and back. But the problem was found and taken out.